This time of year brings a mix of emotions for many reasons. Of course we are thrilled to be home with Molly but it is also a reminder of when our journey began. We talk about it less now but every once in awhile one of us will bring it up. Three years ago I received a call from the doctor telling me they think they saw something wrong with her heart and wanted to send us for a level 2 ultrasound in Boston. A few days before Christmas we were being rushed around from specialist to specialist...ultrasounds, amniocentisis, fetal echos. I can remember the exact feeling that I had as we waited in the food court at Tufts Medical Center while we had lunch in between appointments. I couldn't eat because I was so nervous and Jay ate so much because he was nervous. After a series of appointments and not many answers they sent us home to wait for the results of the amnio. Two days before Christmas we received a call saying the baby didn't have Down Syndrome but we wouldn't know the rest of the results for a few more days. We felt a little bit of relief and THOUGHT we were prepared for whatever information was going to be thrown at us. It was very difficult to enjoy that Christmas. We were so sad and devastated because just a few years before at the same time of year we had to deal with a miscarriage. This time was a little different because we knew at the end of it all we were going to have a baby. She was going to be different but she was going to be ours and we were going to fight with all we had...all three of us and that is what we did!
The following Christmas was a little different. It was Molly's first Christmas. It was spent in the hospital. Of course we wish she was spending it at home but we made the most of it. I wasn't all that upset about spending it at Children's because we could see the light at the end of the tunnel. Discharge was just 15 days away! Of course if you told me that we would still be there at Christmas when we got admitted I probably would've started drinking at that point. But it was good. We stayed the night before because we had to do all of Molly's cares for 24 hours to show that we could take care of her. We had a nurse that we loved. We took Molly for a walk down to the lobby to see the tree and around the unit. Of course she was still on Methadone and Ativan so she didn't see much of anything. Christmas was pretty uneventful. We had a few visitors. Fifteen days later Molly was in our care! That was the best Christmas gift of all!!!
Last Christmas was good. It was our first Christmas home. Molly was just getting over a bug that had landed her in the hospital for a few days. It was our 2nd unplanned admission since she had been home. As much as we hated for her to be sick, we were also happy that she was sick and there wasn't something wrong with her intestines that required surgical intervention. She had a busy year that year. She was bronched a few times. Her trach was removed. We were still being followed by many specialists and were always at Children's. But we were so happy to have her home with us and I think it was the most special Christmas to date.
And that brings us to this Christmas. I haven't been this excited about a Christmas since I was a kid. I'm excited for many reasons. The first reason is because Molly's had a pretty healthy year. She had one admission to Children's and that was to have her trach site closed. She's had a few colds but she handled them great. Her sats remained 97-100. She didn't get a fever (knock on wood). It's such a relief to have our first colds behind us. She has come so far and made so much progress this year. From eating and drinking everything by mouth to pulling herself to stand considering last Christmas we still had to put pillows behind her when she sat on the floor. She is only on 3 medications and once she turns 3 we hope to get rid of her thyroid medication along with her Endocrine doctor. We have one more appointment with Growth & Nutrition in March and then we'll be done with them. That will only leave cardiology which we will never get rid of. We were also able to successfully turn down her pacemaker! And most recently we have converted her crib into a big girl bed! She's growing up so fast and I love every second of it. As much as I love that she's still little her "baby years" have been so tough. I love the little girl she is turning out to be. She is so sweet and stubborn and independent and strong willed. I couldn't have asked for more perfect little girl!
This has been the best year for Molly so far. I'm so happy that she is where she is. My hope for the new year is that she remains as healthy as she has been. I hope she continues to meet her milestones. I hope she enjoys the life we are giving her. She is so deserving of everything that is brought her way. I'm definitely not saying that she's more deserving than any other child because I don't think that's the case. Every child deserves the best! Unfortunately not every child will have the best or even a shot at the best and we have witnessed so much of that this year. So we are more grateful this year for Molly and her health than any other year. We hope for nothing but health and happiness for all of our family and friends that have continued on this journey with us. Your support, love and interest in Molly means more to us than you'll ever know. Happy Holidays and we love all of you!
Kerry
This is the story of a brave little lady that started her life in a unique way. Her courageous start has paved the way for her to touch the lives of wonderful and supportive people and do amazing things with her life!
Sunday, December 23, 2012
Monday, December 3, 2012
Always somethin'!
Over the summer we realized that Molly's "stuff" was taking over our living room. No matter how we organized or arranged it we just couldn't keep it under control so we decided to turn the basement into a play room. We started cleaning it back in August and Jay put the finishing touches on it about a week ago. Molly didn't adjust well to it. She is a creature of habit and doesn't do well with change. But with each day she was getting more used to it. On Thursday we had Early Intervention and since she doesn't like them I figured we would just have our session in the living room until she was more comfortable with her play room. After EI was over we went down to the play room. I sat her on the floor and turned her TV on so I could run upstairs to grab her lunch. On my way up I stepped in something wet. The entire rug was wet. It's happened before where the hose pops off the washing machine and floods the basement. Except this time I noticed there was also toilet paper on the floor. I called Jay and brought Molly back upstairs. Turns out there was a sewage back up that was supposed to be fixed over the summer. I don't know if it never happened, if it did and it backed up again or what happened. Luckily where I sat Molly wasn't wet...yet. It started creeping across the floor. Jay called the property management company (we live in a townhouse) and that night the cleaning crew was at our house, ripping up the rug, cutting out part of the wall, washing what could be saved, etc. We have been dealing with insurance companies, property management company, sanitation and restoration companies. Right now the clean up was covered but we're waiting to hear about the restoration and our property. The personal property will not be covered but we really only care about the walls and rugs. Everything else can be replaced over time. Of course the most important think is Molly's health. Everyone had freaked us out because Molly had been exposed to it and because her immune system is already compromised it scared us that much more. It made us forget about all of the damage and what we had lost in the back of our minds for a minute.
Molly had a doctors appointment the next day for a wellness visit. Usually wellness visits are once a year but because of her medical history and the fear the pediatrician has for Molly we are seen twice a year. She was a little over 24 lbs and 31 1/4" long which puts her in the 5th-10th percentile for weight, height and head circumfrance. First up on my list of concerns was sleeping...or lack there of. It was fresh in my memory because I had only had 3 hours of sleep the night before. I explained how she wakes up every single night. Some nights it's only for 15 minutes, some times it's multiple times a night and other times she's up for 3 hour stretches. We wanted to start her on Melatonin to reset her "sleep clock" but she wanted to wait 2 more weeks. She wants us to try not picking her up when she wakes up and just give her her blankie and tuck her back in. She also wants to introduce naps again. So we are now on day 3 and she woke up every night. Tucking her back in doesn't work. Naps are never going to happen because it was almost 9:00 before she went to bed. I can't go to bed when she does because #1 I have to work and #2 I like my quiet time. I'm not going to make it two more weeks. We also discussed preschool. I expressed my concerns about sending her and told her that we were going to enroll her in the pubic school system but we were going to use it for the therapies that they offer but not send her to the classes. She told me that she was OK with that (not that I cared what she thought) but she would have to be exposed to germs at some point. Early Intervention isn't going to be happy to hear that but it's our decision. Next up, we talked about Orthopedic. EI also isn't going to be happy to hear this because they keep pushing for it. Last up we discussed how she was exposed to the "spill" in our basement. I asked if she had to be put on an antibiotic and she said that since she's already on Amoxicillan there's no need to add another one and to just keep an eye on her. So far she's been fine and we don't anticipate anything changing. Overall, it was a good visit and she was thrilled with how she looks, her progress and how she looks like a "regular toddler". Of course we have many things to work on but she'll get there.
We decorated our tree this past weekend, put up Molly's tree that my parents got for her when she was in the hospital and took her Christmas pictures. This time of year means everything to us. It's so much more than gifts. After all we have been through with Molly it has made us truly appreciate the meaning of this time of year and I'm looking forward to spending the holidays at home with a happy and healthy Molly while thinking of all of the kids that are fighting so hard along with their families.
Here are some pictures from our weekend! I hope you're enjoying your holiday season!
Molly had a doctors appointment the next day for a wellness visit. Usually wellness visits are once a year but because of her medical history and the fear the pediatrician has for Molly we are seen twice a year. She was a little over 24 lbs and 31 1/4" long which puts her in the 5th-10th percentile for weight, height and head circumfrance. First up on my list of concerns was sleeping...or lack there of. It was fresh in my memory because I had only had 3 hours of sleep the night before. I explained how she wakes up every single night. Some nights it's only for 15 minutes, some times it's multiple times a night and other times she's up for 3 hour stretches. We wanted to start her on Melatonin to reset her "sleep clock" but she wanted to wait 2 more weeks. She wants us to try not picking her up when she wakes up and just give her her blankie and tuck her back in. She also wants to introduce naps again. So we are now on day 3 and she woke up every night. Tucking her back in doesn't work. Naps are never going to happen because it was almost 9:00 before she went to bed. I can't go to bed when she does because #1 I have to work and #2 I like my quiet time. I'm not going to make it two more weeks. We also discussed preschool. I expressed my concerns about sending her and told her that we were going to enroll her in the pubic school system but we were going to use it for the therapies that they offer but not send her to the classes. She told me that she was OK with that (not that I cared what she thought) but she would have to be exposed to germs at some point. Early Intervention isn't going to be happy to hear that but it's our decision. Next up, we talked about Orthopedic. EI also isn't going to be happy to hear this because they keep pushing for it. Last up we discussed how she was exposed to the "spill" in our basement. I asked if she had to be put on an antibiotic and she said that since she's already on Amoxicillan there's no need to add another one and to just keep an eye on her. So far she's been fine and we don't anticipate anything changing. Overall, it was a good visit and she was thrilled with how she looks, her progress and how she looks like a "regular toddler". Of course we have many things to work on but she'll get there.
We decorated our tree this past weekend, put up Molly's tree that my parents got for her when she was in the hospital and took her Christmas pictures. This time of year means everything to us. It's so much more than gifts. After all we have been through with Molly it has made us truly appreciate the meaning of this time of year and I'm looking forward to spending the holidays at home with a happy and healthy Molly while thinking of all of the kids that are fighting so hard along with their families.
Here are some pictures from our weekend! I hope you're enjoying your holiday season!
Thursday, November 22, 2012
Happy Thanksgiving!
It’s hard to remember what you are thankful for on a daily
basis but I have a constant reminder of what I am thankful for. I live with her
every single day and never take one of those days for granted. But it took a
whole army of people to get her here and I’m so thankful for the following.
Children’s Hospital Boston is ranked #1 in most departments,
including cardiology. I think Molly helped them put them there J They perform miracles
every day. People come from all over the world to get the best care possible
from this hospital. We are so lucky to live 40 minutes away. She was able to
have the best cardiac surgeon for her. I wish I could tell Dr. Emani every
single day how much we appreciate him and what he did for us, for Molly. I hope
we never need his services again but if we do I wouldn’t want anyone else to
take her heart in their hands. We were
also lucky enough to be able to give back to them twice this year by doing the
Nstar Walk and the Patient Partner. This year we helped raise $7200 for
Children’s Hospital because of the generosity of our friends and family. It
seems like such a small price to pay for saving Molly’s life but we couldn’t be
happier. As much as I hate driving down the highway, walking up the walk way,
entering the lobby, riding the elevator and going to the appointment inside
that building it’s also the only place that I feel accepted and appreciated for
all of the work we have done with Molly. It is just such an amazing place and
we are so grateful to have them in our lives. For Children’s Hospital we are so
thankful.
It’s always a popular thing when someone is sick. Everyone
visits, calls, emails or texts to find out how the sick person is doing. Once
they start to get better the people stop coming, the phone calls, emails and
text become further apart until they eventually stop and people stop checking
in. But then there are the few that continue to visit all the time. They still
read Molly’s blog or comment on her pictures or status or just send a quick
text. Most people we have never met but feel like we have known our whole
lives. For all of you that continue to follow and love Molly we are so thankful
and I hope you all know how much we appreciate you.
Jay and I have been married for 8 years…YIKES! When we said
“through good times and bad” I didn’t know the good and bad were going to be
tested so early on in our marriage but we made it through and we made it
through stronger than before. We are far from perfect. We are both the most
stubborn…STUBBORN people you could ever meet. We could argue about the color of
the sky or if dinosaurs every really existed (I say no). But one thing is
always the same and that is Molly’s best interest. From day one of Molly’s
diagnosis we had to make some pretty tough decisions…the termination of the
pregnancy, how we were going to proceed, getting second opinions…the list goes
on and on. And from that day on we have always been on the same page which has
made it EASIER to get to where we are today. Our life is slowly getting back
into a normal pattern. We are able to live a little bit more like a family with
a normal, healthy kid that won’t let anyone babysit her. I don’t know that I would’ve made it this far
in this crazy journey with anyone else so for Jay I’m thankful.
Family is so important and not always supportive but we are
lucky to have some family that is always there for us. Whether they have done
the walk with us, helped us to raise funds or donated, brought us a coffee,
visited from out of state, brag about her, ask about her, go with me to
doctor’s appointments or take the dogs so we can get away for a few days. We
are so thankful to have a family that cares so much!
I never wanted to be a stay at home mom. My plan was always
to go back to work after I had Molly. Three weeks after I had a c-section I was
back to work. And it went well for a while until Molly needed me more than my
work did and I’m so happy with that decision. I was able to find another job
that allows me to work from home and raise Molly. I work about 30 hours a week
when I have the time to put the hours in. It’s not always easy, especially as
Molly gets older but I’m so happy to be able to do it. For my job that allows
me to be home and see Molly meet all of her milestones I’m thankful.
Then there is my little miss. Everyone is proud of their
child, thinks they are the most beautiful, smart, amazing thing they have ever
seen and I’m no different. Molly is living proof that miracles do happen. She
has fought so hard from the beginning. At times, I’m sure she wanted to give up
but I’m so happy that she didn’t. There has been so much sadness and loss in
the CHD and Heterotaxy community this year and it really took its toll on me. I
took a step back and have been in a much better place since then but those kids
that lost their battle to heart disease and complications from it have taught
me so much and have made me appreciate Molly so much more, if that’s even
possible. She spent the majority of her first 8 months of her life paralyzed
and sedated. Just over the past year alone she eats and drinks everything by mouth,
she pulls herself to stand and sits herself back down, she is a TV addict,
spoiled rotten, hates to sleep, loves to torture me, loves to go grocery
shopping, doesn’t care about the dogs, is only on 3 meds, has grown so much ,
is only followed by 2 specialists (well 2 once we are discharged from Growth
& Nutrition) and made us fall so much more in love with her. She is so
strong, determined and stubborn. Even when she keeps me up all night, she keeps
me laughing all day. She has made me so proud with all she has overcome because
if I had to go through what she has gone through I would’ve given up long ago.
She means everything to us and there isn’t a thing we wouldn’t do for her. I’m
excited to see what the future holds for her. For Molly Renee Leary (a/k/a
Molly Moo) we are so so so thankful!
Last Thanksgiving Molly was admitted to Children’s for a GI
bug. I’m hoping this year will be different. We have had one admission this
year for her trach site closure. Next year we are shooting for zero admissions
but we’ll just take it one day at a time!
Happy Thanksgiving to all of our friends and family! Your
love and support has got us this far and for all of you, once again, we are so
thankful!
Friday, November 16, 2012
Lots of Progress and Changes
Molly has been making lots of steps in the right direction...literally! She started pulling herself up to standing but couldn't figure out how to get herself down. She would look at us and yell at us to get up and sit her down. Well, she figured out how to sit herself down which gives me a little more free time since most of my day was consumed by sitting her down. She has also started walking while holding on to the crib, TV stand, furniture and anything else that she can stand up on. She also likes to stand up and hold my hands and walk towards me. She is showing so much interest in walking. This week during our early intervention session the therapist brought a pair of braces that she borrowed from another family so we could try them out. After disinfecting them we tried them on. She had a harder time pulling herself up and standing in them then she did in a pair of shoes. When she has shoes on she stands perfectly fine. When she doesn't have shoes on she still turns her foot in but it gets better every day. Early Intervention feels that she may not need braces but I think I'm still going to get her checked out by Orthopedic...what the heck, we haven't seen them in awhile.
She has also added another phrase to her vocabulary. She says "all gone". It's a nice change from her bossy "go" that she uses way too frequently. Once in awhile she will also say "goo ga" for "good girl" but she has to be in a great mood for that to happen. She gets her point across, lets us know what she wants and definitely lets us know when she wants it. She likes to be clapped for. Even if you're clapping and it's not for her she still thinks it is and is so happy.
We had an appointment in Boston today for Growth & Nutrition and with EP for a pacemaker check. We got there early so we went up to the cardiology clinic to get her pacemaker checked. They were just checking the battery, see what her heart rate is if they turn it off, she was her rhythm is. Her pacemaker is set to 120. She can go above it but she can't go below it. Usually if she gets mad it will go up like anyones heart rate. When she was in the hospital we could tell when she was getting a fever because her heart rate would go above 120, of course that hasn't happened in a long time (knock on wood). When we had our cardiology appointment back in Sept we asked about her heart rate and he said it was an OK rate for someone her age. Well, the EP nurse told me it's way too high for someone her age and she wanted to turn it down. I told her I wasn't comfortable with it and it makes me nervous so we agreed to turn it down to 110. She said she was going to talk to the doctor and after our Growth & Nutrition appointment she wanted me to give her a call which I did and she wanted to see us back in the office to talk to me. So after our appointment we went back to the cardiology clinic. She said she spoke to the EP attending and Molly's cardiologist and they felt a good rate for her was 90. I wasn't comfortable with 110 so I definitely wasn't comfortable with 90. When we went back down a 2nd time Molly was happier so we were able to see that her own heart rate was 107. Without getting all technical the type of rhythm she has makes us nervous because when she was sick she wouldn't tolerate it. I guess we also have a hard time remembering that she isn't that same sick kid. She really should be fine with a heart rate of 90 and she probably won't get that low but I probably won't sleep tonight, which really isn't any different from any other night because Molly doesn't like to sleep! They turned the rate down around 2pm and so far she has been fine. The nurse told me not to be nervous and that Molly would be fine. Don't be nervous?! She said that she was glad that only one of us was there today because I kept telling her I didn't like it and why I didn't like it. She said she remembered Jay from when Molly was inpatient and she was happy to not have to deal with both of us. I'm not half as bad as Jay is so she's lucky he's on vacation :)
Next up, Growth & Nutrition. I'm usually not really interested in this appointment. I never gain anything from it and I don't think we need it but today I was kind of anxious to get there to have her weighed and measured. Endocrine had made me nervous about her not growing. She looked a little bigger to me and she definitely feels heavier so I just needed that confirmation. This is only the 2nd time that she has been weighed and hasn't cried. I guess she was tired from screaming during EP. She weighs 24 lbs 4 oz and is 33"!!!!!!!! I can't remember how much she weighed the last time but that is an increase and that is a 2" growth in 2 months. I'm so happy with that. She is still gaining weight even though we stopped her g tube feeds which is also great news. She's barely on the chart for height but she is in the 38th percentile for weight for height which means she's proportionate. We discussed her feeding and fluid intake by mouth and they are so happy with her. She is eating and drinking enough. We are going to start weaning her Omperazole (Prilosec). She currently gets 2 doses per day. We are going to cut back to once a day for a few weeks. Then we will go down to every other day for a week and then we can stop it. That will leave us with only 3 meds!!! We don't have to go back until March which is the longest we have gone in between these appointments. When we go back in March that will be our last appointment with Growth & Nutrition. Yay, Molly!!
After our 2 appointments we went over to the CICU to say hi to our friends (doctors and nurses). They are so happy to see how far she has come, see how big she is, see all of the wonderful things she is doing, see her meeting milestones and just being a normal kid (cautiously and with lots of hand sanitizer of course). The nurse practioner asked if she could take a picture of Molly because they have a family who is considering a trach for their kid and she wanted to show them how great she looks now. Two years ago I could only dream that she would be doing this well. It makes me so proud to be her mother. She is going to do great things and I couldn't be happier to be along for the ride.
Now if she would just sleep...
She has also added another phrase to her vocabulary. She says "all gone". It's a nice change from her bossy "go" that she uses way too frequently. Once in awhile she will also say "goo ga" for "good girl" but she has to be in a great mood for that to happen. She gets her point across, lets us know what she wants and definitely lets us know when she wants it. She likes to be clapped for. Even if you're clapping and it's not for her she still thinks it is and is so happy.
We had an appointment in Boston today for Growth & Nutrition and with EP for a pacemaker check. We got there early so we went up to the cardiology clinic to get her pacemaker checked. They were just checking the battery, see what her heart rate is if they turn it off, she was her rhythm is. Her pacemaker is set to 120. She can go above it but she can't go below it. Usually if she gets mad it will go up like anyones heart rate. When she was in the hospital we could tell when she was getting a fever because her heart rate would go above 120, of course that hasn't happened in a long time (knock on wood). When we had our cardiology appointment back in Sept we asked about her heart rate and he said it was an OK rate for someone her age. Well, the EP nurse told me it's way too high for someone her age and she wanted to turn it down. I told her I wasn't comfortable with it and it makes me nervous so we agreed to turn it down to 110. She said she was going to talk to the doctor and after our Growth & Nutrition appointment she wanted me to give her a call which I did and she wanted to see us back in the office to talk to me. So after our appointment we went back to the cardiology clinic. She said she spoke to the EP attending and Molly's cardiologist and they felt a good rate for her was 90. I wasn't comfortable with 110 so I definitely wasn't comfortable with 90. When we went back down a 2nd time Molly was happier so we were able to see that her own heart rate was 107. Without getting all technical the type of rhythm she has makes us nervous because when she was sick she wouldn't tolerate it. I guess we also have a hard time remembering that she isn't that same sick kid. She really should be fine with a heart rate of 90 and she probably won't get that low but I probably won't sleep tonight, which really isn't any different from any other night because Molly doesn't like to sleep! They turned the rate down around 2pm and so far she has been fine. The nurse told me not to be nervous and that Molly would be fine. Don't be nervous?! She said that she was glad that only one of us was there today because I kept telling her I didn't like it and why I didn't like it. She said she remembered Jay from when Molly was inpatient and she was happy to not have to deal with both of us. I'm not half as bad as Jay is so she's lucky he's on vacation :)
Waiting for EP and trying to get away from Nana
Next up, Growth & Nutrition. I'm usually not really interested in this appointment. I never gain anything from it and I don't think we need it but today I was kind of anxious to get there to have her weighed and measured. Endocrine had made me nervous about her not growing. She looked a little bigger to me and she definitely feels heavier so I just needed that confirmation. This is only the 2nd time that she has been weighed and hasn't cried. I guess she was tired from screaming during EP. She weighs 24 lbs 4 oz and is 33"!!!!!!!! I can't remember how much she weighed the last time but that is an increase and that is a 2" growth in 2 months. I'm so happy with that. She is still gaining weight even though we stopped her g tube feeds which is also great news. She's barely on the chart for height but she is in the 38th percentile for weight for height which means she's proportionate. We discussed her feeding and fluid intake by mouth and they are so happy with her. She is eating and drinking enough. We are going to start weaning her Omperazole (Prilosec). She currently gets 2 doses per day. We are going to cut back to once a day for a few weeks. Then we will go down to every other day for a week and then we can stop it. That will leave us with only 3 meds!!! We don't have to go back until March which is the longest we have gone in between these appointments. When we go back in March that will be our last appointment with Growth & Nutrition. Yay, Molly!!
Waiting for Growth & Nutrition with her iPad
After our 2 appointments we went over to the CICU to say hi to our friends (doctors and nurses). They are so happy to see how far she has come, see how big she is, see all of the wonderful things she is doing, see her meeting milestones and just being a normal kid (cautiously and with lots of hand sanitizer of course). The nurse practioner asked if she could take a picture of Molly because they have a family who is considering a trach for their kid and she wanted to show them how great she looks now. Two years ago I could only dream that she would be doing this well. It makes me so proud to be her mother. She is going to do great things and I couldn't be happier to be along for the ride.
Now if she would just sleep...
Sunday, November 4, 2012
Love her...
When Molly was in the hospital Jay and I had a great outlook on life. We had figured out what is important, what is worth fighting for, fighting about, who is important and what really mattered. The longer Molly is home, the harder it is to remember those things. We are slowly slipping back to the way we used to think. It's harder to let the stupid stuff go. It's harder to not complain about the small things but I think I got a little bit of that back today. Molly & I took a trip into Children's today to visit with some fellow heart moms. After talking with them it took me right back to where we were 2 years ago. I was able to remember that there is so much more to life than complaining about Early Intervention or having to get up in the middle of the night because Molly is having a nightmare because there was a time when I couldn't comfort her when she had a nightmare. Now if I can just remember that at 2 am :) Months would go by when I couldn't hold her because she wasn't stable enough to be moved. Now I can't even imagine not being able to pick her up when she wants me or needs me. Every night I rock her to sleep. It's a pattern that we have gotten into and it works for us. She doesn't take a nap all day so usually around 7 she starts to get tired. She will start handing me random toys and I know she's tired and is trying to fight it by handing me a Lego or a block. So she grabs her blankie and climbs up on my lap while I hum "Row row row your boat" and she falls asleep. I carry her upstairs and put her to bed. Tonight I didn't want to put her down. I was thinking about all that she had been through and all of the times I couldn't hold her. All of the "close calls" that we had and all of the times that I thought that I would never have that moment. Good thing she's really heavy because I would've sat there all night with her. She struggles developmentally but honestly if she stayed the exact way she is right now forever I would be happy. I don't care if she doesn't walk or talk. I will carry her for as long as she needs me to. I don't care if I have to get up for her 100 times a night. She's worth it. I don't care if I have to take her to 10 different specialists. At least there are specialists to help her. There isn't a thing we wouldn't do for her. I just want to give her the best life we can while keeping her the healthiest we can keep her. Sometimes it's not easy and we have to pass on a lot of functions, parties and events but she is more important. It gets especially difficult this time of year.
Molly is doing really well. She went trick or treating and loved it. We brought her wagon because she's so heavy. Unfortunately once we took her out of it she didn't want to go back in. She's pulling herself up on everything. Her foot turns in less but it's still doing it. She is taking better steps when we walk with her. Unfortunately she's afraid of the walker now so we just walk with her while holding her hands. She is growing up so fast and getting so big and I love every second of it. We are looking forward to the holidays and hoping she can stay out of the hospital this year since she ended up there last Thanksgiving. That is my only hope for the rest of this year and every year to come!
Thank you for always caring!
Kerry
Molly is doing really well. She went trick or treating and loved it. We brought her wagon because she's so heavy. Unfortunately once we took her out of it she didn't want to go back in. She's pulling herself up on everything. Her foot turns in less but it's still doing it. She is taking better steps when we walk with her. Unfortunately she's afraid of the walker now so we just walk with her while holding her hands. She is growing up so fast and getting so big and I love every second of it. We are looking forward to the holidays and hoping she can stay out of the hospital this year since she ended up there last Thanksgiving. That is my only hope for the rest of this year and every year to come!
Thank you for always caring!
Kerry
Tuesday, October 23, 2012
A tribute to a great nurse!
On May 5, 2010 Molly was transferred to Children's Hospital Boston. That was the day that one of the most special people came into our lives. Of course we didn't know it at the time because we were concentrating on Molly, getting her stable, learning everything that comes along with a child like Molly, oh and recovering from a c-section. Molly was admitted during the day but that night a very special nurse came on and took care of Molly for the very first time. I'm sure she was wishing that night that she had taken the day off. Kristin took care of Molly just about every shift that she worked. I remember the first time that I met Kristin. I was sitting in Molly's room staring at her monitor when Kristin poked her head in because she was there for a meeting. She said "I just wanted to introduce myself. I'm the one that takes care of your daughter at night." I wanted to reply with "I don't care, I just want to take her home and I don't want to get to know anyone". I wasn't in a good place and I just wanted to cry all the time for obvious reasons. The first time we really got to have a conversation with her (other than on the phone) was one of the most difficult nights we had had. Molly was in the cath lab and it was taking a really long time. Longer than we had expected. Kristin shift had started while Molly was down there and she had to explain to us that Molly was having a tough time and they were stabilizing her. Everyone remembers the surgeons and doctors but what people don't always remember is the tough job the nurses have of not only having to deal with parents like us who ask a billion and a half questions but they have to deliver horrible news, make those difficult phone calls in the middle of the night, etc. It's not a job I could do, not a job many people could do and not a job many shouldn't do. But there's no one I would've rather had calling me than Kristin.
As time past we became very close. She became more than just Molly's nurse but a great friend. She was there the morning of Molly's first open heart surgery. She took care of her after her open heart surgery. She gave us something that not many people there could and that was piece of mind and some sleep. Even if Molly was having a horrible night it was EASIER to leave knowing that Kristin was taking care of her. With each passing month she would usually be the one to make Molly's birthday sign. On Halloween she dressed Molly up as a doctor and made sure she took pictures so we could see her in it in case she got too hot and had to take the costume off which of course she did. She just went above and beyond what a nurse is.
This is the first sign that Kristin made for Molly
Of course there were times when we butt heads but she always understood that we were stressed, upset and frustrated for being there for so long (Sorry, Kristin). She cried with us, cried for us and I'm sure cried because of us. When things were great she was happy for us and when they weren't well, she could sympathize. She definitely made our stay there a little easier and we will always be grateful to her for all that she did. Because of all that she did we partnered up with her to raise funds for Children's Hospital Boston as she runs the Miles for Miracles Marathon in New York one week from Sunday. She has been training for months and has never done anything like this before. On top of training for a marathon she is working at Children's, going to school part time, taking care of her family and dog. She will be running 26 miles for the very first time. This Thursday we get to celebrate with her and her husband at a dinner for Miles for Miracles. We are so proud of her and couldn't be happier to have her as a part of our lives. We love you, Kristin! Good luck!!
As time past we became very close. She became more than just Molly's nurse but a great friend. She was there the morning of Molly's first open heart surgery. She took care of her after her open heart surgery. She gave us something that not many people there could and that was piece of mind and some sleep. Even if Molly was having a horrible night it was EASIER to leave knowing that Kristin was taking care of her. With each passing month she would usually be the one to make Molly's birthday sign. On Halloween she dressed Molly up as a doctor and made sure she took pictures so we could see her in it in case she got too hot and had to take the costume off which of course she did. She just went above and beyond what a nurse is.
Of course there were times when we butt heads but she always understood that we were stressed, upset and frustrated for being there for so long (Sorry, Kristin). She cried with us, cried for us and I'm sure cried because of us. When things were great she was happy for us and when they weren't well, she could sympathize. She definitely made our stay there a little easier and we will always be grateful to her for all that she did. Because of all that she did we partnered up with her to raise funds for Children's Hospital Boston as she runs the Miles for Miracles Marathon in New York one week from Sunday. She has been training for months and has never done anything like this before. On top of training for a marathon she is working at Children's, going to school part time, taking care of her family and dog. She will be running 26 miles for the very first time. This Thursday we get to celebrate with her and her husband at a dinner for Miles for Miracles. We are so proud of her and couldn't be happier to have her as a part of our lives. We love you, Kristin! Good luck!!
Tuesday, October 16, 2012
"Baby Steps"
Molly has been very busy which makes us very busy. I have been working with her to pull herself up. She did it once months ago and never did it again. She would put one foot up but never went any further. So I put my hand on her bum for a little support and she would push off into a standing position. She finally did it by herself but would just stand in a split position rather than bring her feet together. Well, now she's a pro and does it all. She started pulling herself up in front of the TV...well, that really shouldn't be a surprise to anyone. Then she started doing it in her bed which is my biggest nightmare because she doesn't sleep as it is. And now she does it everywhere. This morning she greeted me by standing up in her crib. It kind of surprised me because she has never done it. She was like a normal little girl just standing there waiting for me to get her. Now she just needs to learn to get down. She will get down in her crib but she won't do it anywhere else. She has even started taking a few steps. Of course nothing comes without a whole new set of problems. Her ankles are so weak. Her left one is worse than the right one. We don't know if it's because she had a Broviac line in that leg and they had to cut the muscle but it makes sense and that's what we'll go with. Not that it matters what the reason is but we (Jay) always has to have a reason why. She is always rolling her ankle and standing on the inside of her foot. Since she's been standing more she has been correcting it but I think she's going to need braces for at least her ankles. We have an appointment with her pediatrician next month so I'm going to ask for a referral to see ortho. Every time I think we're done with a specialist we end up adding them back in but I know that she will benefit from it and she needs it.
We appealed Synagis (RSV Vaccine) and she was denied. I received a call from the insurance company telling me the pediatrician had sent in an appeal and asked me if I would like to add any type of information to help with the appeal. I asked what she had for a medical history and she said nothing. So I gave Molly's 30 page medical history and it was submitted. They denied her because she's over 2 and they couldn't justify making an exception and the pediatrician agreed. I have never met a pediatric doctor that doesn't advocate like this doctor. UGH! So we are going to stop play group on November 1st. Early Intervention wasn't happy about it but I really don't care. I know that some people are thinking that we can't protect her forever and I know that's true but I can protect her right now and that's what we're going to do. I've said it a million times that if she gets sick we are the ones that are up with her at night. If she ends up hospitalized we are the ones that sit there by her bedside. So say what you want but this is how it is. No play group! We are in the process of making our basement into a play room. Jay's been cleaning it out and it's almost ready to be painted so she will have her own day care center down there.
We had a new speech therapist start today. Molly seemed to like her. She'll like anyone that will blow bubbles at her. She had some different ideas so we'll see how it works.
Other than that, we've been trying to stay healthy and just keep making baby steps forward. She makes us so proud every day.
We appealed Synagis (RSV Vaccine) and she was denied. I received a call from the insurance company telling me the pediatrician had sent in an appeal and asked me if I would like to add any type of information to help with the appeal. I asked what she had for a medical history and she said nothing. So I gave Molly's 30 page medical history and it was submitted. They denied her because she's over 2 and they couldn't justify making an exception and the pediatrician agreed. I have never met a pediatric doctor that doesn't advocate like this doctor. UGH! So we are going to stop play group on November 1st. Early Intervention wasn't happy about it but I really don't care. I know that some people are thinking that we can't protect her forever and I know that's true but I can protect her right now and that's what we're going to do. I've said it a million times that if she gets sick we are the ones that are up with her at night. If she ends up hospitalized we are the ones that sit there by her bedside. So say what you want but this is how it is. No play group! We are in the process of making our basement into a play room. Jay's been cleaning it out and it's almost ready to be painted so she will have her own day care center down there.
We had a new speech therapist start today. Molly seemed to like her. She'll like anyone that will blow bubbles at her. She had some different ideas so we'll see how it works.
Other than that, we've been trying to stay healthy and just keep making baby steps forward. She makes us so proud every day.
Tuesday, September 25, 2012
Catching up...
It's been awhile since I've updated and so much has been going on I'm not sure if I can remember it all...partly because I'm so sleep deprived so I guess I'll start there. Molly used to be the best sleeper and it makes me so sad (and so tired) that she is the total opposite now. We have tried everything to get her to sleep through the night again. Jay keeps telling me to hold her nap during the day but I guess for selfish reasons I didn't want to give up that hour and a half that I had to myself. But I did it and she was sleeping through the night. She did it for 3 nights in a row. Even though she was sleeping through the night I was not. I keep waiting for her to wake up. Last night she fell asleep at 6p, woke up a few times but went right back to sleep. Then 10p rolled around and she was up until 2a. She woke up again at 5:15a and I had to wake her up for the day at 7 because she had a doctors appointment. So we are all pretty tired today. I guess there's no answer and I've given up on sleep all together.
On September 9 Burlington had Municipal Day. The man that ran the even purchased a 40" flat screen TV and we raffled it off. All of the proceeds went to the Miles for Miracles marathon that Kristin Barber (the nurse that's running the marathon) is running. We ended up raising $1700 and we had a great time doing it. Molly was like a local celebrity. I was so happy to be able to do this. Any time we can give back to Children's Hospital makes us so happy.
My dad's work had company day at Canobie Lake and we went with him and my mother. We just never know how she's going to be. We have tried carnival rides before and she didn't like them but this day she loved them. It made me so happy to see her on a carnival ride like other kids her age. Of course we were careful. I had the Purell ready as Jay took her off of the ride. She had the best time and I think this day might be my favorite memory yet.
The following day was a reception for the Miracle Makers of the Nstar Walk that we did back in June for Children's Hospital Boston. Because Jay & I each raised over $750 and Molly raised over $500 we were invited to attend. It was at an apple orchard where they provided lunch, tshirts and of course apple picking. Did we have a great time? Umm...no. Molly was miserable the entire day. She did a complete 180 from the previous day. What we didn't know was it was the beginning of a very long week. She ended up with a stuffy nose and a cough. We were watching her temperature, O2 sats and her appetite. She never developed a fever and her O2 always stayed at 100%. She was always at the back of her mouth so we're not sure if it was a cold, her teeth or a combination of both. She missed early intervention all week and I had to cancel her play group for the week but she should be good to go this week.
We were also notified that Molly doesn't qualify for Synagis this year which isn't great news. We try so hard to prevent her from getting sick and the thought of her getting RSV scares us so much. I spoke to the pediatrician's office yesterday and they are going to try to get it approved through her secondary insurance but they told me they have never been able to get Synagis approved through Mass Health. If they don't approve it they will appeal it through our primary insurance and we'll have to pay the deductible which is $2,000 but each shot is $1,500 and she gets 5 of them in a season. If they don't approve the appeal then it will be a very long winter of me and Molly sitting in the house with no outside contact with germy, booger people. We have come too far to risk an admission now.
That brings us to today. Molly had a routine cardiology visit. She hadn't been seen since April and hasn't had an echo and EKG since January. The further apart the visits, the more nervous I get. I don't know why because it was drilled into us to always "look at the patient" and to look at her she looks fantastic. Nice and pink, growing, breathing perfect, etc. But I'm so afraid our luck is going to run out which is why I dread this appointment, well that and we are so afraid she's going to lose her sh*t and make it a very long appointment. We haven't been giving her the iPad so we can use it today and she would be happy to see it. Although we almost didn't have an iPad because Molly dropped it on the floor and smashed the glass. Jay took it to the Apple store and they gave us a new one for nothing..Phew! Close call! Back to the cardiology appoinment. The nurse knows us and knows us well. She came out to the waiting room and asked if we thought it was a good idea to do the echo first and we said yes. If she got weighed first it would've been over. She was fantastic through the echo, laughing and making noises, resting her feet on the echo techs leg like she was at home. She said that Molly is one of her most challenging patients to get images on because of how "different" her heart is. She was able to get the images pretty quick. The cardiologist came in to listen to her which she was happy and he said that she sounded great. She looked fantastic and no one ever would've thought this would've been the outcome for Molly. As much as I don't like the cardiology visits I do like getting his opinion because he has seen her on some pretty horrible days. It's just nice to hear how great she looks now. The EKG tech couldn't believe how great she looks and how big she's getting. Everyone in the office kept saying that she was like a different kid now. The cardiologist went over her echo. The pressures in her heart are normal. The function is great. Her heart is nice and strong. There is still mild leaking in the mitral valve and some mild narrowing. He said the narrowing is nothing to be concerned with right now but we are going to have to keep an eye on that valve. It is growing with her and the function is is fine. He thinks we will get her childhood out of that valve and who knows beyond that. No one knows what the future holds for that valve. It may not need any work but we're not going to worry about it right now. Just put it in the back of our minds with everything else we have to worry about. He was very happy with her and all of her progress which makes us happy. We have to go back in 6 months for another visit and a pacemaker check. So I have 5 months of no worrying about a cardiology visit.
I think I've covered everything for now. Thank you for continuing to care!
Kerry
On September 9 Burlington had Municipal Day. The man that ran the even purchased a 40" flat screen TV and we raffled it off. All of the proceeds went to the Miles for Miracles marathon that Kristin Barber (the nurse that's running the marathon) is running. We ended up raising $1700 and we had a great time doing it. Molly was like a local celebrity. I was so happy to be able to do this. Any time we can give back to Children's Hospital makes us so happy.
My dad's work had company day at Canobie Lake and we went with him and my mother. We just never know how she's going to be. We have tried carnival rides before and she didn't like them but this day she loved them. It made me so happy to see her on a carnival ride like other kids her age. Of course we were careful. I had the Purell ready as Jay took her off of the ride. She had the best time and I think this day might be my favorite memory yet.
The following day was a reception for the Miracle Makers of the Nstar Walk that we did back in June for Children's Hospital Boston. Because Jay & I each raised over $750 and Molly raised over $500 we were invited to attend. It was at an apple orchard where they provided lunch, tshirts and of course apple picking. Did we have a great time? Umm...no. Molly was miserable the entire day. She did a complete 180 from the previous day. What we didn't know was it was the beginning of a very long week. She ended up with a stuffy nose and a cough. We were watching her temperature, O2 sats and her appetite. She never developed a fever and her O2 always stayed at 100%. She was always at the back of her mouth so we're not sure if it was a cold, her teeth or a combination of both. She missed early intervention all week and I had to cancel her play group for the week but she should be good to go this week.
We were also notified that Molly doesn't qualify for Synagis this year which isn't great news. We try so hard to prevent her from getting sick and the thought of her getting RSV scares us so much. I spoke to the pediatrician's office yesterday and they are going to try to get it approved through her secondary insurance but they told me they have never been able to get Synagis approved through Mass Health. If they don't approve it they will appeal it through our primary insurance and we'll have to pay the deductible which is $2,000 but each shot is $1,500 and she gets 5 of them in a season. If they don't approve the appeal then it will be a very long winter of me and Molly sitting in the house with no outside contact with germy, booger people. We have come too far to risk an admission now.
That brings us to today. Molly had a routine cardiology visit. She hadn't been seen since April and hasn't had an echo and EKG since January. The further apart the visits, the more nervous I get. I don't know why because it was drilled into us to always "look at the patient" and to look at her she looks fantastic. Nice and pink, growing, breathing perfect, etc. But I'm so afraid our luck is going to run out which is why I dread this appointment, well that and we are so afraid she's going to lose her sh*t and make it a very long appointment. We haven't been giving her the iPad so we can use it today and she would be happy to see it. Although we almost didn't have an iPad because Molly dropped it on the floor and smashed the glass. Jay took it to the Apple store and they gave us a new one for nothing..Phew! Close call! Back to the cardiology appoinment. The nurse knows us and knows us well. She came out to the waiting room and asked if we thought it was a good idea to do the echo first and we said yes. If she got weighed first it would've been over. She was fantastic through the echo, laughing and making noises, resting her feet on the echo techs leg like she was at home. She said that Molly is one of her most challenging patients to get images on because of how "different" her heart is. She was able to get the images pretty quick. The cardiologist came in to listen to her which she was happy and he said that she sounded great. She looked fantastic and no one ever would've thought this would've been the outcome for Molly. As much as I don't like the cardiology visits I do like getting his opinion because he has seen her on some pretty horrible days. It's just nice to hear how great she looks now. The EKG tech couldn't believe how great she looks and how big she's getting. Everyone in the office kept saying that she was like a different kid now. The cardiologist went over her echo. The pressures in her heart are normal. The function is great. Her heart is nice and strong. There is still mild leaking in the mitral valve and some mild narrowing. He said the narrowing is nothing to be concerned with right now but we are going to have to keep an eye on that valve. It is growing with her and the function is is fine. He thinks we will get her childhood out of that valve and who knows beyond that. No one knows what the future holds for that valve. It may not need any work but we're not going to worry about it right now. Just put it in the back of our minds with everything else we have to worry about. He was very happy with her and all of her progress which makes us happy. We have to go back in 6 months for another visit and a pacemaker check. So I have 5 months of no worrying about a cardiology visit.
I think I've covered everything for now. Thank you for continuing to care!
Kerry
Thursday, September 6, 2012
She doesn't need me anymore...
Today was Molly's first day at her play group through early intervention. We obviously had some hesitations because we are crazy germ freaks (Jay is worse than me). But we know that Molly needs to socialize with other kids and after weighing the pros and cons we decided to give it a try.
Molly hasn't been sleeping well, or at all so I today easily could've went either way. She was up until 12:30 last night and woke up at 7:15 on her own which was good because we needed to be there at 9:30. It's at a church just 5 minutes from our house. The second she saw another kid she was off and didn't even look at me once for the next hour and a half. The session started off with a half hour a free play. There was a small ball pit, some blocks and a few other toys. There was only one other mom there. There was a grandmother, a brother and a nanny so I guess my plan to find another mom to relate to was out the window. But that's not what was important. Molly loves to play with any type of ball so she went over to the ball pit which was just a baby pool filled with plastic balls. Molly is very loud. Especially when she gets excited. She has a high pitch scream which usually scares kids or adults if they're not paying attention. There was a little boy sitting in the ball pit and Molly did her scream, scared the little boy and he started crying. I was so emabarrassed but how do you tell her not be excited. She was following another little girl around and kept trying to pull her hair. Another little girl walked up to her and gave her a hug. Jay would've died if he was there. Everyone was saying "aww". I did an awkward ha ha and took Molly to play with something else. She had the best time and didn't want to leave. At one point I had to leave the room to change her diaper and she started crying but the second we walked back in she was happy again. It makes me feel a little better sending her off to preschool when the time comes because she's very attached to me so knowing she doesn't care about me when other kids are around makes me feel better. The teacher said that she did great and she is such a social butterfly, which she definitely does NOT get from me.
I'm so happy that she loved it and I can't wait to take her back next week.
Tuesday, September 4, 2012
Recap of Molly...
Over the past 2+ years I’ve tried to do my best to make sure everyone was informed on Molly’s progress. Since starting Molly’s blog in June 2010 many people have stopped following because she’s not “fun” anymore and that’s fine. But there are still many that do. Some new and some that have been on this crazy journey with us since day 1. Many may think they know why Molly is where she is in life and some of you may not know at all. I just wanted to give a recap on Molly’s life to date, the very brief version of course. So here goes.
*On May 12th Molly made her first trip to the OR for heart surgery. She had a PDA ligation and PA bands placed. There was too much blood going to her lungs, making it impossible to breathe and the hope was this would make it possible to extubate…NOPE!
*May 14th: tried extubation and failed. She was reintubated the following day.
*May 18th: Bronch to find out if the reason for her failed extubation was because of an obstruction or collapse in her airway.
*May 19th: Tried extubation again. Reintubated the following day.
*On May 24th she made a trip to the cath lab. She was down there for hours. Way longer than any of us had expected. She was very sick when she came back up and did not tolerate it all. When we were able to see her she looked horrible – bluish, sweaty and packed in ice. From that day on she had a rough time.
*June 13th we received our first middle of the night phone call. It’s not a phone call anyone wants to make and we definitely didn’t like to receive it. It was actually the nurse that is running the marathon in honor of Molly, Kristin Barber. She had to call us to tell us they were opening Molly up at the bedside to place temporary pacing wires.
*June 24th: We met with her cardiac surgeon, Dr. Emani, and went over the final details of what was going to happen the next day and to answer any questions we may have had. He told us that she was in the best shape she was going to be in to have this surgery. We also spoke to one of the cardiac fellows who told us that there was a good chance she was going to come up on ECMO. We were blindsided and devastated. But this was only the beginning of Molly proving everyone wrong!
*June 25th: The hardest, longest most emotional day in my life. Molly was first case for a very risky surgery. We didn’t know what the outcome was going to be. Everyone was expecting her to come up very sick from the OR which she was but thankfully she was able to come off of bypass. She was wheeled down to the OR around 7am. We were able to walk her as far as the OR doors, kiss her goodbye and only hold on to the faith we had in the surgeon and of course Molly. She ended up going on bypass a little early because she was having a tough time. Her surgeon came out to talk to us. He looked tired and not overly confident this was going to be the answer. Her chest was left open and only time would tell.
*June 29th: My second least favorite day to date. We received our 2nd middle of the night phone call because Molly’s heart rate was 235 and they thought we needed to come down. They had shocked her twice to get her back. By the time we got there she was back in a normal range. The entire ride down I thought that was it. I just wanted her to hang on long enough so I could be there.
*June 30th: Her chest was closed.
*July 1st: Trip to the cath lab. This time she handled it better than the first time. They were trying to decide if the leaking on her valve warranted another trip to the OR. At this time they decided to hold off.
*July 12: Back to the OR to repair her mitral valve and place a pacemaker. This time she came up with her chest closed. After she was done, 8 hours later, we spoke to her surgeon. This time he looked much happier than the last time he was in her chest. Much more confident and relieved. Again, only time will tell.
She was left paralyzed for days. Each time we tried to let her wake up she would have trouble and have to be paralyzed again.
*July 17th: Started a low fat formula because her chest tubes were dumping out chylous fluid, about 500ccs a day. This went on for 6 weeks. During this time she lost chest tubes and had to have them replaced, countless times.
*July 22nd: Diagnosed with a blood infection. Started antibiotics. I was getting fevers as high as 104. This went on for weeks and weeks. I was paralyzed the majority of the time that I had this infection.
*August 4th: Another trip to the cath lab
*August 20th: Had a broviac line surgically placed in my leg.
*October 6th: Molly’s ET tube had been in there for 5 months. That is about 4 months, 3 weeks too long. The week before we were called in because the nurse couldn’t settle her down. They had to paralyze her to capture her. That was what we took as the sign that Molly needed the trach. We were giving her every opportunity to extubate but it just wasn’t going to happen. On October 6th she received her trach. It was by far the best medical decision we had made for her.
*December 16th: Last trip to the OR for a g tube placement
*January 4th: Discharged to home for the very first time!
Life at home has been crazy but we have definitely made the most of every single day at home. We have never taken any minute or second for granted. Just in her first year of life she was able to overcome all of the above and come off of the oxygen and ventilator at home. At 15 months old she had her trach removed and has been playing catch up ever since. We kept her pretty secluded for the first year she was home. We took her to stores but only to stores that we knew weren’t crowded. We never went to anyones house or anywhere that kids would be. If we were in public we never took her out of her stroller. Constantly washing and sanitizing our hands. We took a lot of heat for the way we lived our life and we still do to this day. People think we are over the top protective of her. That may be true but I follow too many kids and I see what a common cold can do to a baby that is immune compromised so we aren’t going to change. We are very careful. She lives a full life and she’s the happiest little girl. She loves grocery shopping and Target. She loves the swings. She loves Cheez Its and Graham crackers. She loves books and TV. She loves her dogs. She loves to be outside. She loves her bike. She loves other kids and she loves mommy & daddy. She does not love going to Children’s. She does not love echos. She does not love being held by anyone other than me or Jay. She does not love being told no. She is just a normal little girl that has some challenges to meet but we she will get there with a great support system and a positive attitude. We do everything we can to make her happy and to get her to where she needs to be. She is starting a play group on Thursday. It is a play group through early intervention so it will be other kids that have some type of developmental delay. I think it will be good for her because she’ll get to be with other kids and it’ll be good for me because I’ll get to talk to other mom’s that kind of know what I’m going through. We’ve been trying to get her in for a few months so I’m very excited for this Thursday.
As always, thank you so much for always being a part of this journey. We love that little girl more than anything!!
*On May 12th Molly made her first trip to the OR for heart surgery. She had a PDA ligation and PA bands placed. There was too much blood going to her lungs, making it impossible to breathe and the hope was this would make it possible to extubate…NOPE!
*May 14th: tried extubation and failed. She was reintubated the following day.
*May 18th: Bronch to find out if the reason for her failed extubation was because of an obstruction or collapse in her airway.
*May 19th: Tried extubation again. Reintubated the following day.
*On May 24th she made a trip to the cath lab. She was down there for hours. Way longer than any of us had expected. She was very sick when she came back up and did not tolerate it all. When we were able to see her she looked horrible – bluish, sweaty and packed in ice. From that day on she had a rough time.
*June 13th we received our first middle of the night phone call. It’s not a phone call anyone wants to make and we definitely didn’t like to receive it. It was actually the nurse that is running the marathon in honor of Molly, Kristin Barber. She had to call us to tell us they were opening Molly up at the bedside to place temporary pacing wires.
*June 24th: We met with her cardiac surgeon, Dr. Emani, and went over the final details of what was going to happen the next day and to answer any questions we may have had. He told us that she was in the best shape she was going to be in to have this surgery. We also spoke to one of the cardiac fellows who told us that there was a good chance she was going to come up on ECMO. We were blindsided and devastated. But this was only the beginning of Molly proving everyone wrong!
*June 25th: The hardest, longest most emotional day in my life. Molly was first case for a very risky surgery. We didn’t know what the outcome was going to be. Everyone was expecting her to come up very sick from the OR which she was but thankfully she was able to come off of bypass. She was wheeled down to the OR around 7am. We were able to walk her as far as the OR doors, kiss her goodbye and only hold on to the faith we had in the surgeon and of course Molly. She ended up going on bypass a little early because she was having a tough time. Her surgeon came out to talk to us. He looked tired and not overly confident this was going to be the answer. Her chest was left open and only time would tell.
*June 29th: My second least favorite day to date. We received our 2nd middle of the night phone call because Molly’s heart rate was 235 and they thought we needed to come down. They had shocked her twice to get her back. By the time we got there she was back in a normal range. The entire ride down I thought that was it. I just wanted her to hang on long enough so I could be there.
*June 30th: Her chest was closed.
*July 1st: Trip to the cath lab. This time she handled it better than the first time. They were trying to decide if the leaking on her valve warranted another trip to the OR. At this time they decided to hold off.
*July 12: Back to the OR to repair her mitral valve and place a pacemaker. This time she came up with her chest closed. After she was done, 8 hours later, we spoke to her surgeon. This time he looked much happier than the last time he was in her chest. Much more confident and relieved. Again, only time will tell.
She was left paralyzed for days. Each time we tried to let her wake up she would have trouble and have to be paralyzed again.
*July 17th: Started a low fat formula because her chest tubes were dumping out chylous fluid, about 500ccs a day. This went on for 6 weeks. During this time she lost chest tubes and had to have them replaced, countless times.
*July 22nd: Diagnosed with a blood infection. Started antibiotics. I was getting fevers as high as 104. This went on for weeks and weeks. I was paralyzed the majority of the time that I had this infection.
*August 4th: Another trip to the cath lab
*August 20th: Had a broviac line surgically placed in my leg.
*October 6th: Molly’s ET tube had been in there for 5 months. That is about 4 months, 3 weeks too long. The week before we were called in because the nurse couldn’t settle her down. They had to paralyze her to capture her. That was what we took as the sign that Molly needed the trach. We were giving her every opportunity to extubate but it just wasn’t going to happen. On October 6th she received her trach. It was by far the best medical decision we had made for her.
*December 16th: Last trip to the OR for a g tube placement
*January 4th: Discharged to home for the very first time!
Life at home has been crazy but we have definitely made the most of every single day at home. We have never taken any minute or second for granted. Just in her first year of life she was able to overcome all of the above and come off of the oxygen and ventilator at home. At 15 months old she had her trach removed and has been playing catch up ever since. We kept her pretty secluded for the first year she was home. We took her to stores but only to stores that we knew weren’t crowded. We never went to anyones house or anywhere that kids would be. If we were in public we never took her out of her stroller. Constantly washing and sanitizing our hands. We took a lot of heat for the way we lived our life and we still do to this day. People think we are over the top protective of her. That may be true but I follow too many kids and I see what a common cold can do to a baby that is immune compromised so we aren’t going to change. We are very careful. She lives a full life and she’s the happiest little girl. She loves grocery shopping and Target. She loves the swings. She loves Cheez Its and Graham crackers. She loves books and TV. She loves her dogs. She loves to be outside. She loves her bike. She loves other kids and she loves mommy & daddy. She does not love going to Children’s. She does not love echos. She does not love being held by anyone other than me or Jay. She does not love being told no. She is just a normal little girl that has some challenges to meet but we she will get there with a great support system and a positive attitude. We do everything we can to make her happy and to get her to where she needs to be. She is starting a play group on Thursday. It is a play group through early intervention so it will be other kids that have some type of developmental delay. I think it will be good for her because she’ll get to be with other kids and it’ll be good for me because I’ll get to talk to other mom’s that kind of know what I’m going through. We’ve been trying to get her in for a few months so I’m very excited for this Thursday.
As always, thank you so much for always being a part of this journey. We love that little girl more than anything!!
Wednesday, August 22, 2012
We're getting there!
Molly has had a gtube since she was 7 months old. Her belly was never fed for about the first 6 months of her life which made it very hard to gain weight. The fact that she was on a low fat formula for about 6 months didn't help matters either. But we did what we had to do to get her better. No regrets with anything so far. We also say that the trach was the best medical decision that we made for Molly but the gtube definitely runs a close second. Especially because it has taken so long to get her eating by mouth. She is 27 months old and we still rely on that tube for some things. When Molly came home from the hospital back in January 2011 she was on continuous over night feeds and I can't remember what her day time feeds were but it was pretty frequent. Growth and Nutrition has helped us transition from low fat formula to regular formula and from continuous feeds to bolus feeds. Then we started spreading the feeds out further apart hoping she would get hungry forcing her to eat by mouth. It has been a very long battle. Molly is very VERY stubborn. Hmm :) Over the last month she has learned to love food. Not all and we've had to get pretty creative with getting milk and veggies into her. She eats just about everything - veggie burgers, pancakes, cheesburgers, fries, fish, pasta, etc. It's so rewarding to not only see her eat like a "normal" kid but to know that our hard work has paid off. We never gave up no matter how many times we wanted to. We stuck with it and look at her now!!! We saw Growth & Nutrition today and we were able to get rid of her last gtube feed. I am so excited. Not because I don't want to be bothered but because it's one step closer to her getting the tube out and being more like every other kid...on the outside anyway :) We are so close yet kind of far away from removing the tube. We're not in a hurry because that tube has saved us during surgeries and illnesses when she doesn't feel like eating but we think we are safe when it comes to the eating. The thing that is holding us back is the amount of fluids she takes by mouth. She's still not drinking enough by mouth. We are still giving her 8oz of fluid through her g tube a day and she's only drinking about 4-6oz by mouth a day. We are also still giving her her meds through her tube. But I don't think that's going to be a big deal to take by mouth. Even once she starts taking everything by mouth we can't touch her tube for 6 months before it can be removed but it's OK. She has already come this far. There is no need to rush anything. All of her doctors are so impressed with her and so are we.
I have been taking Molly to the Early Intervention scensory room once a week and she loves it. They have all kinds of equipment and things for her to do. She climbs up foam hills, rocks a little boat, crawls through tunnels. It really just amazes me how far she has come because leaving the hospital the way she did I never would've believed this is where she would be today. I still get down about how rough things have been for her but anyone in our position would. Then when I see her crawling over to Jay's planter and pulling the dirt out of it for the 500th time today it makes me so happy to see her getting into things she shouldn't and not listening to me when I tell her no (I know I'm going to regret that statement some day). We are also on a waiting list for a play group through Early Intervention. I think she would benefit from it and I can be there to supervise, sanitize and disinfect :) She is doing so great with standing and walking and I think this will help her so much more. Not to mention she loves being around other kids and to be around other kids and parents that are in a similar situation to us would be good for me too. It's hard not having anyone that can relate to you.
So we don't have to go back to Endocrine for 6 months and Growth & Nutrition for 3 months but we do have cardiology next month and that includes and echo and EKG :( I'm already stressing about it and it's not until the end of September. That is one appointment I can never put out of my mind. For now I'm going to enjoy all of the progress that she has made and continues to make every day.
As always, thank you for following the most amazing person I have ever met!
Kerry
Who needs toys?
I have been taking Molly to the Early Intervention scensory room once a week and she loves it. They have all kinds of equipment and things for her to do. She climbs up foam hills, rocks a little boat, crawls through tunnels. It really just amazes me how far she has come because leaving the hospital the way she did I never would've believed this is where she would be today. I still get down about how rough things have been for her but anyone in our position would. Then when I see her crawling over to Jay's planter and pulling the dirt out of it for the 500th time today it makes me so happy to see her getting into things she shouldn't and not listening to me when I tell her no (I know I'm going to regret that statement some day). We are also on a waiting list for a play group through Early Intervention. I think she would benefit from it and I can be there to supervise, sanitize and disinfect :) She is doing so great with standing and walking and I think this will help her so much more. Not to mention she loves being around other kids and to be around other kids and parents that are in a similar situation to us would be good for me too. It's hard not having anyone that can relate to you.
So we don't have to go back to Endocrine for 6 months and Growth & Nutrition for 3 months but we do have cardiology next month and that includes and echo and EKG :( I'm already stressing about it and it's not until the end of September. That is one appointment I can never put out of my mind. For now I'm going to enjoy all of the progress that she has made and continues to make every day.
As always, thank you for following the most amazing person I have ever met!
Kerry
Friday, August 10, 2012
Busy week...as always
If this post doesn't make any sense it's because Molly has been keeping me up all hours of the night. I'm like an infant. I require a good 8 hours of sleep to function properly, which hasn't happened in about 3 years.
We had early intervention on Monday. Monday is usally speech and music therapy. Her appointment was at 11:45 and they ask that you give them a 15 minute grace period. This time is very tough to begin with. It's close to lunch time and nap time. Especially if she gets up at 7am like she has been doing. Well, they didn't get here until 12:15 without a phone call or appology. I was not very happy. I'm not a big fan of the speech woman to begin with. She makes me feel like I'm not doing something right as a parent, not that she would have any experience parenting a kid like Molly. I feel like she's always judging me even though her job is not to judge me as a parent but to help Molly with communication. I didn't want to get rid of her because I think that's where Molly needs the most help. I've been going back and forth about her for awhile now because she likes to do things her way and there's more than one way to do something...especially if the way you're doing it isn't working. We had our session and they left at 1:15 after Molly had her meltdown. She was tired and hungry. It threw off her entire day because they were late. She didn't eat well because she was so tired. With ever fit she pitched that day I got more annoyed with the speech therapist. I was going to see the feeding/physical therapist on Thursday so I gave myself a few days to make a decision.
We had an appointment on Wednesday with Endocrinology in Boston. Her appointment was at 10:30 which meant we had to leave the house at 8 to allow for traffic. I had to wake Molly up at 6:30. It takes longer to get her ready than it does to get myself ready. Theere wasn't much traffic and we made it into Boston in about an hour. I was told to be there 15 minutes early in case they could take us early. I don't know when I've ever been to a doctors appointment and they've taken me early. Well, this day was no different...a half hour later than our appointment we were called in. Molly weighed in at 10.91kg and I think 81cm (around 24 lbs, 9 oz and I think like 31"). This appointment is usually quick. She repeats the same thing every time "I think her thyroid disease is because she was so sick and it's not congenital". "I would like to try to take her off of the thyroid medicine but I think we should wait until she's 3 because this is the most critical time for brain development". Of course everyone keeps a close eye on her height and weight. According to the chart her height didn't change much since we were there 4 months ago. It's so hard to get an accurate height and weight because she's always so mad when they weigh and measure her. So I'm going to start doing it at home to make sure she is growing. She's tiny but she's proportionate. She's probably the height of an 18 month old. Her shoe size is also small. She is in a 3 right now (infant) but so close to a 4. It's very hard to find cute shoes that small but I manage :) I can tell that she's getting longer from her clothes which is also difficult to buy. She can wear a size 12 months pants for her waist but 18 months for length but a 24 month for her top or a dress. See, petite! I wish I had that problem! She is due to have her thyroid levels checked anyway so we added that to our list of things to do this week. She told us she would see us back in 6 months!!!! I don't think we've been able to go 6 months in between any appointment. Very exciting!
After we came back from the appointment we learned of a fellow Heterotaxy baby that had passed away suddenly. Even though we almost never meet these families we have a special connection. It's hard not to fall in love with a baby that fights so hard and still manages to flash a smile and try to make you think that there is nothing wrong with them. It always hits so close to home and devestates us because we know that could've been us at any point. We are so lucky to have Molly with us today and there isn't a day that goes by that we aren't grateful for all of the work, prayers and love that have been put into allowing our family to be possible. If you think you're having a bad day, know that it could be so much worse.
Anytime we have a doctors appointment if effects Molly's sleeping. She wakes up crying in the middle of the night. I can't calm her down and it's almost like she's afraid back to sleep. Wednesday and Thursday night was no different. She was up from 2-4a on Wednesday and 12:30-3a on Thursday. This can go on anywhere from a few days up to a week. I hate that she is so scared that it wakes her up. Hopefully as she gets older it won't effect her this way anymore. One can hope.
Yesterday we had Early Intervention. This time it was feeding and physical therapy. I spoke to her about my concerns of the speech therapist and we decided that it's time to move on to a new therapist. I really hesitated because it takes Molly so long to get used to a new person but we still have almost a year to go so I think it's the right choice. We also discussed how much protein and calories Molly should be getting in the course of the day. She is getting the proper amount of protein but Jay and I calculated how many calories she gets and she is on the low end of the proper amount. So today she had to go for labs. On the way back we stopped at McDonalds and she had her very first happy meal. She ate just about a whole cheeseburger (without the bun) and some fries. I'm pretty sure she got her calories in lunch alone :) Last night she had fish and fries for dinner, definitely one of her favorite meals.
She continues to amaze us every day with something new. She acts more and more like a little girl everyday and we just love her to pieces.
We had early intervention on Monday. Monday is usally speech and music therapy. Her appointment was at 11:45 and they ask that you give them a 15 minute grace period. This time is very tough to begin with. It's close to lunch time and nap time. Especially if she gets up at 7am like she has been doing. Well, they didn't get here until 12:15 without a phone call or appology. I was not very happy. I'm not a big fan of the speech woman to begin with. She makes me feel like I'm not doing something right as a parent, not that she would have any experience parenting a kid like Molly. I feel like she's always judging me even though her job is not to judge me as a parent but to help Molly with communication. I didn't want to get rid of her because I think that's where Molly needs the most help. I've been going back and forth about her for awhile now because she likes to do things her way and there's more than one way to do something...especially if the way you're doing it isn't working. We had our session and they left at 1:15 after Molly had her meltdown. She was tired and hungry. It threw off her entire day because they were late. She didn't eat well because she was so tired. With ever fit she pitched that day I got more annoyed with the speech therapist. I was going to see the feeding/physical therapist on Thursday so I gave myself a few days to make a decision.
We had an appointment on Wednesday with Endocrinology in Boston. Her appointment was at 10:30 which meant we had to leave the house at 8 to allow for traffic. I had to wake Molly up at 6:30. It takes longer to get her ready than it does to get myself ready. Theere wasn't much traffic and we made it into Boston in about an hour. I was told to be there 15 minutes early in case they could take us early. I don't know when I've ever been to a doctors appointment and they've taken me early. Well, this day was no different...a half hour later than our appointment we were called in. Molly weighed in at 10.91kg and I think 81cm (around 24 lbs, 9 oz and I think like 31"). This appointment is usually quick. She repeats the same thing every time "I think her thyroid disease is because she was so sick and it's not congenital". "I would like to try to take her off of the thyroid medicine but I think we should wait until she's 3 because this is the most critical time for brain development". Of course everyone keeps a close eye on her height and weight. According to the chart her height didn't change much since we were there 4 months ago. It's so hard to get an accurate height and weight because she's always so mad when they weigh and measure her. So I'm going to start doing it at home to make sure she is growing. She's tiny but she's proportionate. She's probably the height of an 18 month old. Her shoe size is also small. She is in a 3 right now (infant) but so close to a 4. It's very hard to find cute shoes that small but I manage :) I can tell that she's getting longer from her clothes which is also difficult to buy. She can wear a size 12 months pants for her waist but 18 months for length but a 24 month for her top or a dress. See, petite! I wish I had that problem! She is due to have her thyroid levels checked anyway so we added that to our list of things to do this week. She told us she would see us back in 6 months!!!! I don't think we've been able to go 6 months in between any appointment. Very exciting!
After we came back from the appointment we learned of a fellow Heterotaxy baby that had passed away suddenly. Even though we almost never meet these families we have a special connection. It's hard not to fall in love with a baby that fights so hard and still manages to flash a smile and try to make you think that there is nothing wrong with them. It always hits so close to home and devestates us because we know that could've been us at any point. We are so lucky to have Molly with us today and there isn't a day that goes by that we aren't grateful for all of the work, prayers and love that have been put into allowing our family to be possible. If you think you're having a bad day, know that it could be so much worse.
Anytime we have a doctors appointment if effects Molly's sleeping. She wakes up crying in the middle of the night. I can't calm her down and it's almost like she's afraid back to sleep. Wednesday and Thursday night was no different. She was up from 2-4a on Wednesday and 12:30-3a on Thursday. This can go on anywhere from a few days up to a week. I hate that she is so scared that it wakes her up. Hopefully as she gets older it won't effect her this way anymore. One can hope.
Yesterday we had Early Intervention. This time it was feeding and physical therapy. I spoke to her about my concerns of the speech therapist and we decided that it's time to move on to a new therapist. I really hesitated because it takes Molly so long to get used to a new person but we still have almost a year to go so I think it's the right choice. We also discussed how much protein and calories Molly should be getting in the course of the day. She is getting the proper amount of protein but Jay and I calculated how many calories she gets and she is on the low end of the proper amount. So today she had to go for labs. On the way back we stopped at McDonalds and she had her very first happy meal. She ate just about a whole cheeseburger (without the bun) and some fries. I'm pretty sure she got her calories in lunch alone :) Last night she had fish and fries for dinner, definitely one of her favorite meals.
She continues to amaze us every day with something new. She acts more and more like a little girl everyday and we just love her to pieces.
Friday, August 3, 2012
The Results Are In...
Earlier this week Molly had her 6 month evaluation through Early Intervention. The point of the assessment is to tell us where she is now, what goals she has met and what she still needs to work on, not that I need an assessment to tell me that. In order to continue with the services we have to go through with it so we did. We did most of it on Wednesday but our sessions are only 45 mins long and that doesn't allow for enough time to do the entire evaluation. We did as much as we could and we completed the gross motor, fine motor, self care and social section on Thursday. We went over the scores and I was kind of disappointed. I don't know how accurate they are because they test her on the stupidest things. Some things she was beyond a 2 year level but other things that she didn't do or couldn't do brought her score way down. The most disappointing for me was her score in gross motor. I don't know why I thought she was going to score higher but because she doesn't walk or cruise along furniture she scored pretty low. Six months ago she was at a 7 month level and now she's at 9 months. When she starts walking that will go way up but for now that's what it is. She is almost 27 months old and scored at a 9 month level...heartbreaking! I'm not going to dwell on it because I know she is doing so well but I did have a pity party yesterday. Next was fine motor. She was at an 8 month level 6 months ago and now she's at an 11 month level. The reason she's only at 11 months is because she doesn't pick things up with her pointer finger and thumb. She picks it up with her whole hand. She also didn't color on the paper which really brings the score down. UGH! On to self care. There are 3 sections for this group. For feeding she was at 8 months and now she's at 11 months which I was pretty surprised but she explained that it's because she doesn't feed herself with a fork or spoon. Toileting was 11 months and now she's 15 months and hygeine was 14 months now she's 15 months. For selfcare over all her score was 14 months. Last was social. She offered toys to me, she adjusts well to new surroundings, she engages in conversation, etc. She was at 10 months and now she's at 16 months. I don't know the results of communication or cognative. I don't want to know the results of communication and we are guessing for cognative she'll be at a 12 month level. I told the woman that as long as she continues to make forward progress that's all I care about and it's true but those scores really bothered me yesterday but I'm over it today. She is still the most amazing little girl I know and will do amazing things in life.
I had mentioned that we are helping a very wonderful nurse and good friend, Kristin, raise money for the New York Marathon. She is running the 26.2 mile marathon in honor of Molly and all of her other patients at Children's Hospital Boston. We have partnered up with her through Miles for Miracles. We are so proud of her and so honored that she would include us in such an amazing event. After all, we owe her so much for all that she has done for us and for Molly. One of our good friends, sells Pampered Chef and has offered to throw an online Pampered Chef Fundraising Party. The party runs now through August 8th. 10% of the sales will go the Miles for Miracles fundraiser. If you are interested in getting some great new gadgets for your kitchen or for a gift for someone else (Christmas is only 4 months away) as well as giving back to our favorite cause, please click on the link and as always we appreciate your support!!
Pampered Chef Fundraiser for Miles for Miracles
I had mentioned that we are helping a very wonderful nurse and good friend, Kristin, raise money for the New York Marathon. She is running the 26.2 mile marathon in honor of Molly and all of her other patients at Children's Hospital Boston. We have partnered up with her through Miles for Miracles. We are so proud of her and so honored that she would include us in such an amazing event. After all, we owe her so much for all that she has done for us and for Molly. One of our good friends, sells Pampered Chef and has offered to throw an online Pampered Chef Fundraising Party. The party runs now through August 8th. 10% of the sales will go the Miles for Miracles fundraiser. If you are interested in getting some great new gadgets for your kitchen or for a gift for someone else (Christmas is only 4 months away) as well as giving back to our favorite cause, please click on the link and as always we appreciate your support!!
Pampered Chef Fundraiser for Miles for Miracles
Thursday, August 2, 2012
Assessment
Jay and I were talking the other night...about the only thing we really know how to converse about and that is Molly of course. We were talking about her developmental delays. She has made great progress over the last year and we are happy with where she is and as much as we hate to compare her to other kids I think it's only human that we do from time to time. I'm not saying that we compare her to another heart healthy 2 year old because we are smarter than that but we follow the progress of a lot of cardiac kids and while we only know of a few that have spent the amount of time in the hospital that Molly has and are home doing well, we can't help but feel that we don't know any that are as far behind as she is. We are not concerned that she's far behind because she is making forward progress...she eats everything..fish, chicken, yogurt, ice cream, pancakes, etc. She drinks, not a ton and definitely not as much as we need her to before that g tube can come out but just 5 months ago she wasn't drinking at all so we are happy with that. She crawls, pretty fast now. She will take steps while holding on to my fingers. She can go from sit to stand and pull herself to her knees. She has pulled herself to standing twice and hasn't done it again since. She says "mama, dada, ga (for go)". I believe she is the furthest behind in communication. I'm not talking about saying words, I mean about communicating what she wants and doesn't want, what she needs, etc. According to early intervention that is usually the last piece to fall into place.
She had her 6 month evaluation yesterday, well, part of it. We should be finishing up one part today and one part on Monday. I don't even want to hear the results of the communication. I think she's make great progress with fine motor and gross motor. Yesterday she was asked to put a puzzle together and she did it. I was shocked and proud of course. It was only 3 pieces but she did it. They also asked her to a few other things. Some she did and others she wasn't interested in. They wanted her to take a crayon and mark a piece of paper. She took the crayon, flung it across the room and started laughing. I'm not sure if that counts for anything :) They asked how she gets my attention if she wants me and I said she fusses. That isn't good enough for them. What the heck does a kid do that doesn't talk or walk? I have so much frustration for Early Intervention. I feel like it has been a big waste of the last year and a half. I wish I knew about outpatient rehab long ago because I would've pursued that before now. Early Intervention only goes up to 3 and every time we have a session I think to myself that I can't wait until she's 3. I know it doesn't matter where she is as far as age goes developmentally but it's still makes me a little sad that she has to work so much harder than a heart healthy kid to reach her milestones.
Early intervention will be here in a minute. Wish me luck!
She had her 6 month evaluation yesterday, well, part of it. We should be finishing up one part today and one part on Monday. I don't even want to hear the results of the communication. I think she's make great progress with fine motor and gross motor. Yesterday she was asked to put a puzzle together and she did it. I was shocked and proud of course. It was only 3 pieces but she did it. They also asked her to a few other things. Some she did and others she wasn't interested in. They wanted her to take a crayon and mark a piece of paper. She took the crayon, flung it across the room and started laughing. I'm not sure if that counts for anything :) They asked how she gets my attention if she wants me and I said she fusses. That isn't good enough for them. What the heck does a kid do that doesn't talk or walk? I have so much frustration for Early Intervention. I feel like it has been a big waste of the last year and a half. I wish I knew about outpatient rehab long ago because I would've pursued that before now. Early Intervention only goes up to 3 and every time we have a session I think to myself that I can't wait until she's 3. I know it doesn't matter where she is as far as age goes developmentally but it's still makes me a little sad that she has to work so much harder than a heart healthy kid to reach her milestones.
Early intervention will be here in a minute. Wish me luck!
Friday, July 27, 2012
Vacation!
Two years ago I never would've dared to think about planning a vacation with Molly. I guess part of me didn't think it was ever going to happen because never did I think she would be well enough or I would trust that we would be able to take care of her that far away from a hospital. Who am I kidding? From Children's. Even a year ago we still weren't in a place to make any long term plans or think about a vacation. But now she is a whole different kid and I say kid because she's not a baby anymore. She is growing up and I love it! Part of me is sad that I missed out on a lot of her being a baby but I'm thrilled that she is with us, doing fantastic and being a little girl.
Our friend's family was generous enough to allow us to stay at their condo for 3 days. We left here Tuesday morning and headed up to NH. The condo was right down the street from Weirs Beach. We didn't do a whole lot the first day. Just unloaded the car and got settled in. Jay's family also has a house not to far from there so he was familiar with the area. We had plans to go to Santa's Village the next day so we tried to get to bed fairly early because it was a two hour ride from where we were staying. Well, that night was a nightmare. We weren't even sure we were going to get to Santa's Village the following day. We put Molly to bed and just as I was getting ready to go to bed she woke up. She was crying and wouldn't calm down. SO I took out the ipad, put on her favorite movie and she calmed right down. Except that backfired because all she wanted to do was watch the ipad and wouldn't go to sleep. I tried to put her in the pack n play with the ipad but then she would hit something and the thing would shut off so I'd have to put it back on. So frustrating. This went on until 2am. I was finally able to go to sleep and she woke up at 5:45 for the day. I couldn't believe it. I wanted to throw up I was so tired. We heard it was going to rain on Thursday so we made the decision to suck it up, get dressed and head up to Santa's Village. Molly was in a great mood and we figured she would nap on the way up. We were in the car for about 3 minutes and she was out! We had to wake her when we got there. Our first stop was the carousel. I figured she would like it because she's been on the rides at the mall and loved it well, I was wrong...very very wrong. She started out with one hand on the reindeer and one hand holding on to my shirt. then she decided that she was going to put both hands on my shirt, clenching for dear life, and faced backwards for the entire ride. I had to sing "The Wheels On The Bus" for the entire ride so she wouldn't burst into tears. All the while I'm thinking to myself "please hurry up and stop the ride". After that was over we fed her lunch and just walked around the park to see if maybe there was something else she could try now that she was more awake, full belly and ready to go. I guess the thing we didn't think about was the signs that say "nobody with a heart problem can ride this ride". I thought about when she's older but not at 2. She still had a great time watching all of the kids, being outside and taking in the new surroundings. We will definitely take her back when she's a little older and can walk (she's VERY heavy). I'm so happy that we went and were able to make these memories. We wanted to make absolute sure she was tired for the night so we took her for a walk down the beach. We went into all of the little shops, went to the arcade. I tried to take a picture with her in the photo booth but she was more interested in looking at herself in the mirror on the side of the booth so that was a flop. We put her down for the night and she went right to sleep and slept all night...WOO HOO!!
We didn't have a whole lot planned for Thursday because it was supposed to rain so Jay's cousin gave us a bunch of tokens for an arcade that we had planned to go to while we were there so that's what we did. We tried to put Molly on a few of the coin-operated rides and she was not having it. We found one that she would tolerate so I guess it wouldn't matter if we did find a ride for her to go on at Santa's Village because she probably would've had a meltdown anyway. Once we were done we headed back, fed her lunch, put her down for a nap and once she woke up headed out to do some more shopping. We started packing everything up so we could head out early this morning.
We were home by 10am, unpacked by 11 and Molly was down for a nap by 11:30. Since we both felt like we were going to fall on our face if we didn't do something we went out. We ended up going out to dinner at a Mexican restaurant up the street. Molly ended up eating a cheese quesadilla and some of whatever it was that Jay had. There are very few things that she won't at least try. Some things she'll take multiple bites of and other things she'll eat one bite and won't take another but at least she tries it. I'm so excited to get back to Growth & Nutrition so they can see all that she does now!
We had a great vacation. We didn't do a whole lot but we were away with just the three of us. Playing on the floor, laughing at Molly because she's that hilarious, making memories that I will cherish forever. It was the perfect vacation and I wouldn't have done anything different!
Our friend's family was generous enough to allow us to stay at their condo for 3 days. We left here Tuesday morning and headed up to NH. The condo was right down the street from Weirs Beach. We didn't do a whole lot the first day. Just unloaded the car and got settled in. Jay's family also has a house not to far from there so he was familiar with the area. We had plans to go to Santa's Village the next day so we tried to get to bed fairly early because it was a two hour ride from where we were staying. Well, that night was a nightmare. We weren't even sure we were going to get to Santa's Village the following day. We put Molly to bed and just as I was getting ready to go to bed she woke up. She was crying and wouldn't calm down. SO I took out the ipad, put on her favorite movie and she calmed right down. Except that backfired because all she wanted to do was watch the ipad and wouldn't go to sleep. I tried to put her in the pack n play with the ipad but then she would hit something and the thing would shut off so I'd have to put it back on. So frustrating. This went on until 2am. I was finally able to go to sleep and she woke up at 5:45 for the day. I couldn't believe it. I wanted to throw up I was so tired. We heard it was going to rain on Thursday so we made the decision to suck it up, get dressed and head up to Santa's Village. Molly was in a great mood and we figured she would nap on the way up. We were in the car for about 3 minutes and she was out! We had to wake her when we got there. Our first stop was the carousel. I figured she would like it because she's been on the rides at the mall and loved it well, I was wrong...very very wrong. She started out with one hand on the reindeer and one hand holding on to my shirt. then she decided that she was going to put both hands on my shirt, clenching for dear life, and faced backwards for the entire ride. I had to sing "The Wheels On The Bus" for the entire ride so she wouldn't burst into tears. All the while I'm thinking to myself "please hurry up and stop the ride". After that was over we fed her lunch and just walked around the park to see if maybe there was something else she could try now that she was more awake, full belly and ready to go. I guess the thing we didn't think about was the signs that say "nobody with a heart problem can ride this ride". I thought about when she's older but not at 2. She still had a great time watching all of the kids, being outside and taking in the new surroundings. We will definitely take her back when she's a little older and can walk (she's VERY heavy). I'm so happy that we went and were able to make these memories. We wanted to make absolute sure she was tired for the night so we took her for a walk down the beach. We went into all of the little shops, went to the arcade. I tried to take a picture with her in the photo booth but she was more interested in looking at herself in the mirror on the side of the booth so that was a flop. We put her down for the night and she went right to sleep and slept all night...WOO HOO!!
We didn't have a whole lot planned for Thursday because it was supposed to rain so Jay's cousin gave us a bunch of tokens for an arcade that we had planned to go to while we were there so that's what we did. We tried to put Molly on a few of the coin-operated rides and she was not having it. We found one that she would tolerate so I guess it wouldn't matter if we did find a ride for her to go on at Santa's Village because she probably would've had a meltdown anyway. Once we were done we headed back, fed her lunch, put her down for a nap and once she woke up headed out to do some more shopping. We started packing everything up so we could head out early this morning.
We were home by 10am, unpacked by 11 and Molly was down for a nap by 11:30. Since we both felt like we were going to fall on our face if we didn't do something we went out. We ended up going out to dinner at a Mexican restaurant up the street. Molly ended up eating a cheese quesadilla and some of whatever it was that Jay had. There are very few things that she won't at least try. Some things she'll take multiple bites of and other things she'll eat one bite and won't take another but at least she tries it. I'm so excited to get back to Growth & Nutrition so they can see all that she does now!
We had a great vacation. We didn't do a whole lot but we were away with just the three of us. Playing on the floor, laughing at Molly because she's that hilarious, making memories that I will cherish forever. It was the perfect vacation and I wouldn't have done anything different!
Thursday, July 19, 2012
Always Something
The majority of our days are spent trying to prevent Molly from getting sick...disinfecting counter tops, sanitizing and washing our hands, wiping down shopping carts, tables, chairs, playground equipment, etc. We have hand sanitizer in every room of the house, both cars, diaper bag, purse, strollers and strollers. When we show Molly the Purell bottle she rubs her hands together. Where is that on the list of milestones because it's at the top of my list :) But no matter how hard we try sometimes it's just not enough.
On Saturday we noticed that her poop was more wet but we just figured that she was eating a lot more things now and probably didn't agree with her. Sunday she was really crabby and just miserable. Monday she had a runny nose, cough and her sleeping wasn't great. Tuesday she seemed a little better but she woke up crying and sweating but she never had a fever, her O2 was normal (98-99) and her heartrate was normal. We assumed she just had a cold. We had been giving her Tylenol since Sunday just to keep her comfortable. Yesterday morning she woke up with a rash on her face. It was only on her face so I assumed it was because she sleeps with her blankie on her face and was hot. I emailed a picture to a few of our very wonderful nurse friends to see if they thought it was a heat rash because that's what we were thinking and they said that it could be. So we didn't put anything on it because that is always our first instinct. I looked up heat rashes for babies and it said to keep it dry, don't put anything on it and try to keep the baby cool by turning the AC on and putting a fan on them when they sleep which is what we do anyway. When she woke up today it had spread to her chest, stomach, back and diaper area so I took her to the pediatrician. She looked at her throat and it was red and where she's had a runny nose, a lot of muscous and a cough the rash is a result of a virus. It should run it's course in a few days. She told me to give her Benadryl which makes me nervous because when she was in the CICU they never liked to give it to her so I emailed our good friend in the CICU to find out why and it's OK to give it to her now. I gave her a dose and she took it in her mouth like a big girl! Oh and she weighed in at 24.6 lbs!!! That's up one pound from the last time she was seen at Growth & Nutrition.
We were also approached by one of the nurses that used to take care of Molly when she was in the hospital. Actually she's more than a nurse to us. She is a great friend and will always be a part of our lives. She took care of Molly from the day she came in until the day she left. I don't know how we didn't scare her away! She is running the New York City Marathon in November and asked us to be a patient partner in the Miles for Miracles. We are so honored that she picked Molly to take on this journey with her. She will be running 26.2 miles in honor of all of her patients and more specifically Molly. She is required to raise a minimum of $3,000 and we have agreed to help her out with this. All of the money raised goes back to Children's Hospital Boston and well, everyone knows how we feel about Children's Hospital. We are trying to think of fundraisers or any way to help her raise these funds. We will be cheering her on and are so proud of her. We love you, Kristin!!! You can follow her progress at www.runningfromtheheart2012.blogspot.com or read about the Miles for Miracles at http://howtohelp.childrenshospital.org/newyork/page/Kristin-Barber.htm#.UAT4ggWjEMk.facebook
As always, thank you for checking in our miracle!
Love, Kerry
We were also approached by one of the nurses that used to take care of Molly when she was in the hospital. Actually she's more than a nurse to us. She is a great friend and will always be a part of our lives. She took care of Molly from the day she came in until the day she left. I don't know how we didn't scare her away! She is running the New York City Marathon in November and asked us to be a patient partner in the Miles for Miracles. We are so honored that she picked Molly to take on this journey with her. She will be running 26.2 miles in honor of all of her patients and more specifically Molly. She is required to raise a minimum of $3,000 and we have agreed to help her out with this. All of the money raised goes back to Children's Hospital Boston and well, everyone knows how we feel about Children's Hospital. We are trying to think of fundraisers or any way to help her raise these funds. We will be cheering her on and are so proud of her. We love you, Kristin!!! You can follow her progress at www.runningfromtheheart2012.blogspot.com or read about the Miles for Miracles at http://howtohelp.childrenshospital.org/newyork/page/Kristin-Barber.htm#.UAT4ggWjEMk.facebook
As always, thank you for checking in our miracle!
Love, Kerry
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